MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Savvymama's picture
Replies 2
Last reply 3/2/2015 - 8:33pm

My mom is 58 years old and presented with stage 4 melanoma in her lymph nodes (neck and groin) in October 2014. She was taken off of Yervoy after only one dose because it dropped her platelet count to 0 and her hemoglobin to 5.5. She had active bleeding. She was hospitalized for 10 days while doctors tried to get her blood counts higher. She then started on Keytruda and was going to have her fourth infusion today but her PET scan showed no tumor response to Keytruda. Tumors are pressing on veins in her legs causing major swelling to her lower extremities. Her doctor will be starting her on a chemotherapy regimen for Taxol and Carboplatin. Does this seem like the next logical step? She is BRAF +. I'm a pediatric oncology nurse so I'm very familiar with chemotherapy but there is a lot I still have to learn about Melanoma. Any advice?  Thanks.

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Before my most recent radiation and now again whenever I try to sleep in my recliner I can no longer recline it all the way because fluid collects in my throat and I wake up choking. The most I can go seems about 45 degrees.

The fluid i spit up seems to be anywhere from clear watery to very white with various shades in between.

i would normally just deal with such a minor thing but I have another head mri Monday the 9th. Although I requested the open mri this time and it is very difficult with all my spine issues I have no idea how I can do it with this choking issue.

i know how important the head mri is so I'm very worried I can't do it with this choking stuff. I did find there are reclining mri but they seem to be for the arms and legs. I've seen a picture of a very large open mri but it just showed a guy lying flat.

I've thought of asking for some med to practically knock me out but then I think what if the fluid builds in my throat and I can't press the ball.

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Before my most recent radiation and now again whenever I try to sleep in my recliner I can no longer recline it all the way because fluid collects in my throat and I wake up choking. The most I can go seems about 45 degrees.

The fluid i spit up seems to be anywhere from clear watery to very white with various shades in between.

i would normally just deal with such a minor thing but I have another head mri Monday the 9th. Although I requested the open mri this time and it is very difficult with all my spine issues I have no idea how I can do it with this choking issue.

i know how important the head mri is so I'm very worried I can't do it with this choking stuff. I did find there are reclining mri but they seem to be for the arms and legs. I've seen a picture of a very large open mri but it just showed a guy lying flat.

I've thought of asking for some med to practically knock me out but then I think what if the fluid builds in my throat and I can't press the ball.

Login or register to post replies.

Before my most recent radiation and now again whenever I try to sleep in my recliner I can no longer recline it all the way because fluid collects in my throat and I wake up choking. The most I can go seems about 45 degrees.

The fluid i spit up seems to be anywhere from clear watery to very white with various shades in between.

i would normally just deal with such a minor thing but I have another head mri Monday the 9th. Although I requested the open mri this time and it is very difficult with all my spine issues I have no idea how I can do it with this choking issue.

i know how important the head mri is so I'm very worried I can't do it with this choking stuff. I did find there are reclining mri but they seem to be for the arms and legs. I've seen a picture of a very large open mri but it just showed a guy lying flat.

I've thought of asking for some med to practically knock me out but then I think what if the fluid builds in my throat and I can't press the ball.

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/2/2015 - 9:47pm
Replies by: Janner, Anonymous, pd1gal

I had two moles biopsied on 2/18. The one on my back apparently came back fine. The one on my head, they chose to to an excision within the week. I had that done on 2/28 (biopsy results came back on 2/23). I feel as though they aren't telling me much. And of course I don't understand the dermopathologists terminology. Can someone help me interpret the results? The surgeon who removed the rest of it told me to hug my hairdressers neck because she could have saved my life. And he told me it was pretty gnarly but that's about it and I'm making myself crazy waiting for the new pathology reports to come back. If it is melanoma I can handle it. It's the unknown I can't handle. That is part of my OCD. The lack of control. Thanks in advance. How can I post the report? I'm mobile.

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magnus31's picture
Replies 8
Last reply 3/2/2015 - 4:58pm

Dear all,

I haven't been very active in this forum but I do find a lot of support and inspiration in reading through threads in here. So thanks all and stay positive!

After my initial IIIA diagnosis late 2012, I haven't really been blessed with good news. Lung mets were identified during summer of 2014 and I turned stage IV. After a non-responsive round of Yervoy with only mild side-effects, two brain mets were identified in December 2014. At that point I was put on Nivolumab/PD1 treatment as well as scheduled for gammaknife treatment in January 2014.

The thought of my head being fixed and inserted into a machine scared me immensely. At times, even more than the brainmets! But the gammaknife treatment went much smoother than I had feared. The sound of the radio and the fact that I could communicate with nurses through a microphone calmed me down. The scheduled 43 minutes passed by really quickly.  Three days after I worked out again at the gym as usual and recommenced my weekly runs.

Now. I had my first Nivolumab/PD1 evaluation last week. And finally some good news! All mets in lungs and brains had shrunk. Some even dramatically! For the first time since my diagnosis, I felt I finally had found some breathing space. Next evaluation is scheduled for April and I can only hope that the mets will have regressed even further by then.

Since this good news, I have finally dared to look forward again. Planned a move, started pondering a future career move, investing in a house...

But after few minutes of planning ahead, I find myself stopping and asking myself critical questions. Can I medically founded believe that PD1 will work for me in the longer term, just on the basis of a positive first evaluation? Is it reasonable to believe that this drug will keep me alive and kicking for years to come? Is me planning a long time ahead just fooling myself? Will I still be alive in six months? Dare I hope for six more years?

I am enduring no side effects at all from Nivolumab/PD1. Thoughts and stories on the PD1 treatment are welcome. Long-term survivor stories would especially have made my day!

 

 

 

 

 

 

 

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Cyto's picture
Replies 3
Last reply 3/2/2015 - 9:57am
Replies by: SABKLYN, Anonymous, Cyto

Hello,

 

My mother (43 years old) was diagnosticed with a melanoma 1 month ago. Before the operation who will occur next week, he had to pass a echography and a scanner, all is ok (it is a good new ? as it is not always efficiency as i know, and here's the resultat, I'm asking a lot of questions, hope you can explain me :

 

Type of Melanoma : SSM

Deepth of Breslow : 4mm

Clark : Level 3

Ulcerated : Yes

Satelitte by transit : No

Mitotic rate : 2/ mm²

Regression : No

TIL : No

 

I'm paniqued for her, her melanoma is very depth (4mm), but the clark Level is only 3, this level it is a good prognosis factor ? I saw the mitotic rate is fairly low, it is good too ?

Also, clinical doctor has founded a lymph node at the neck, meaning it would be 100% positive ?

 

And also, its lesion is located on her external ear, which is not irrigated by the flood, so it is risked or considered as a extremity ?

 

Thanks.

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tjc0912's picture
Replies 6
Last reply 3/2/2015 - 1:40pm

Hi all

I have not been on this site in a very long time but am now wondering if anyone has any advice.  My dad is 66 and has stage IV melanoma that he has been fighting for 2 1/2 years.  He has tried yervoy, IL2, anti-pd1, a merk trial, radiation and now is starting taxol/carboplatin...throughout all these treatments he has been very itchy (I'm sure part of the disease process as well) but im wondering if anyone else has dealt with this? If so is there any remedy that anyone can recommend? It is getting so bad he can barely stand it?

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Looking for a recommendation for an excellent dermatologist in the Minneapolis area.  Thanks

"Lord, Together We Can Handle Anything"

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tomw65's picture
Replies 9
Last reply 3/2/2015 - 11:39am

I was diagnosed with stage 3 melanoma in Jan of 2015. I am a 70 year old married man with 3 children and just received my 1st of 4 immuno therapy infusions with 3 weeks in between treatments.looking to find support any where that I can through this journey. New to this site so just trying to find my way around.

hazel43green

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/1/2015 - 9:47am
Replies by: SABKLYN, arthurjedi007, Anonymous, KMick, yazziemac

My partner went to his family doctor with a highly suspicious lesion on the bridge of his nose.  He never had a lesion there before. It grew quickly over 4-6 weeks before he saw the doctor.  It was ulcerated and bleeding, and black and blue in colour.  The doctor referred him for a biopsy.  The referral was dated for 3 1/2 months later.  We asked for a sooner appointment and couldn't get one.  The biopsy came back as positive for melanoma and a month later the neck lymph nodes came back positive.  

My question is-how long do most people wait to have an initial biopsy?  

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sstech's picture
Replies 3
Last reply 3/1/2015 - 2:09pm
Replies by: Mat, sstech, Bubbles

I have been on Opdivo treatment for 2 weeks and am continuing Tafinlar capsules twice a day for 2 more weeks. I know that the Opdivo is very new. I am only the second patient at M D Anderson Melanoma Clinic to be on this treatment. Just curious if there is anyone else on the Opdivo on this site that I can compare notes with. I was diagnosed 5/5/2012 and have been fighting like hell every since. I feel so blessed that the Opdivo was fast tracked through the FDA and is available right when I need it.

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Hello

I was hoping to connect with any patients of Dr. Hogg who have Stage 4 melanoma.  My husband, Pete, is a patient of his.

 

Yasmin

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Kdw2012's picture
Replies 6
Last reply 2/28/2015 - 9:16pm

I suffered two seizures on February 22. I have completed Yervoy February 5 they believe the Yervoy may have caused a flare of these tumors. These brain tumors have all occurred since November. I am now going to be starting Keytruda on Thursday March 5. 

Has anyone else had similar issues and if so what kind of success have you had with Keytruda and how quickly?

Kim Wright

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MixtaJones's picture
Replies 7
Last reply 3/1/2015 - 8:59am

Hello everyone,

It has been a very long time since I have visited this site but I figured it was time to swing by and post something that should give people so hope just like many of the post I read.

It has been almost a year since I found a lump under my arm which led to a diagnosis of Early Stage IV Melanoma. I say early because it had spread to all of my lymph nodes in my upper left axilla and they were not able to remove all of the tumors. I did not have distant tumors but it had spread enough to get me to the stage IV classification. Most would say that is a bad thing but it was a blessing that I didn't realize till much later.

I had surgery to remove 22 lymph nodes under my arm followed by radiation which left me with about 7 tumorous lymph nodes in my collar bone area. Because I was diagnosed with Stage IV I was able to go straight on Yervoy and did 4 rounds that finished up on July 11, 2014. My 30 day scan showed that the tumors will still there and slightly smaller. The big surprise was at three months. All of the tumors were GONE!!! No sign of them! I just had my 6 month scan and I am still clear!

Even though I had 22 lymph nodes removed I have had not a single sign of lymphedema. even though I went through radiation and had Yervoy infusions I had very little side affects. Even though a year ago the doctor told my that I had a very tough fight ahead of me I am here alive and well. I know it is relatively early in the game to claim victory but I feel that cancer has lost this battle.

I know not everyone out there will have the results I have had. I know every ones situation is different. But for those of you who have just been Diagnosed and have read all the scary data out there please know that Melanoma is not a death sentence. For those of you that have been fighting this monster for a while, Please don't give up. There is hope and soon cancer will be a thing of the past.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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